Searching For Diagnosis. CIDP? Please Help Me

Posted by 10987654321 @10987654321, Aug 9 5:47pm

I’m 27. I’ve had to quit working. I can barely function.

Started April after deviated septum surgery. A few weeks later I had my blood drawn in hospital after not feeling well. My right arm (where drawn) went tingly and within 12 hours it spread throughout my whole body. My whole body has felt tingly (now numb) since.

Symptoms:

Numbness/(started as tingling)/Weakness of Limbs and hands and feet

Cold limbs that feel extremely weak/hollow they get more cold after blood tests and my hands are starting to cramp and be stiff

Extremely dry eyes (blink weird)

Pain in spine that wraps around chest/shortness of breath

Digestive problems

Severe head confusion/concentration problems

Extreme fatigue

Dizziness

Quit sweating

Please please please share this with anyone around the globe and help me. I was supposed to get married next month. Now I can’t even walk to the mailbox without feeling sick. 🙁

Liked by swift

Please help. Any insight is appreciated.

REPLY

Hi @10987654321, as a last resort, it is not uncommon for people to post to online communities, like Mayo Clinic Connect. Certainly members here cannot provide a diagnosis, but perhaps share similar stories to help you research your issues and work with your doctors to find cause and cure. Here are a few discussions that you may wish to read to begin your investigation.

– Mysterious shortness of breath https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/
– My Mysterious Illness https://connect.mayoclinic.org/discussion/my-mysterious-illness/
– Icy feet and ankles with Small Fiber Neuropathy….anyone? https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/
– 2 years sick, nauseous and dizzy, no answer, please help. https://connect.mayoclinic.org/discussion/2-years-sick-no-answer-please-help/
– 1 million dollar workup and still no answer, 8 months of suffering https://connect.mayoclinic.org/discussion/1-million-dollar-workup-and-still-no-answer-8-months-of-suffering/

What specialists have you seen? What tests have been performed?

Liked by rwinney

REPLY

@10987654321 Have they ruled out COVID? It can cause a lot of crazy symptoms and as you said, you had a sinus procedure. I had recent surgery and testing for COVID virus by nasal swab and the blood test for antibodies was standard procedure before my surgery. From what I understand, a hospital is a better place for that test, not a drive up testing area in a parking lot.

REPLY
@colleenyoung

Hi @10987654321, as a last resort, it is not uncommon for people to post to online communities, like Mayo Clinic Connect. Certainly members here cannot provide a diagnosis, but perhaps share similar stories to help you research your issues and work with your doctors to find cause and cure. Here are a few discussions that you may wish to read to begin your investigation.

– Mysterious shortness of breath https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/
– My Mysterious Illness https://connect.mayoclinic.org/discussion/my-mysterious-illness/
– Icy feet and ankles with Small Fiber Neuropathy….anyone? https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/
– 2 years sick, nauseous and dizzy, no answer, please help. https://connect.mayoclinic.org/discussion/2-years-sick-no-answer-please-help/
– 1 million dollar workup and still no answer, 8 months of suffering https://connect.mayoclinic.org/discussion/1-million-dollar-workup-and-still-no-answer-8-months-of-suffering/

What specialists have you seen? What tests have been performed?

Jump to this post

Mri brain one without contrast one a month Later without contrast mri spine eeg

A bunch of bloodwork

Do you think this could be vascular? Like Vasculitis?

REPLY
@10987654321

Mri brain one without contrast one a month Later without contrast mri spine eeg

A bunch of bloodwork

Do you think this could be vascular? Like Vasculitis?

Jump to this post

Please help me

REPLY

I was told I had sensory polyneuropathy that is demylenating on emg.

No one has treated yet they though b12 shots but I’m getting worse!

ADVICE trouble walking now can’t drive function right

Seemed to get weaker after lumbar puncture

What should I do

Do you think it could be cidp???

REPLY
@10987654321

I was told I had sensory polyneuropathy that is demylenating on emg.

No one has treated yet they though b12 shots but I’m getting worse!

ADVICE trouble walking now can’t drive function right

Seemed to get weaker after lumbar puncture

What should I do

Do you think it could be cidp???

Jump to this post

Hi @10987654321, I moved your most recent message to the discussion you started earlier to keep the history of your story in one place. I'm glad that you are making progress in your diagnosis and that the EMG showed sensory polyneuropathy that is demylenating. Here are a couple of discussions to help you further with your investigation of CIDP and polyneuropathy.

– Idiopathic Progressive Polyneuropathy: How to find a specialist? https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/
– CIDP (chronic inflammatory demylinating polyneuropathy) https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

REPLY

I have been to a neurologist that has taken nine months to figure out I have CIDP and now he is sending me to another neurologist that specializes in this field. However I cannot get in to see him for a month and a half and I’m really concerned because my symptoms are not getting better. I have health insurance through OptumCare Southwest medical and I don’t know what to do. I’m really perplexed because I’ve had several nerve studies and it the last neurologist took nine months to come up with this disease and now the new neurology specialist wants to give me another nerve study.

REPLY
@slavichx

I have been to a neurologist that has taken nine months to figure out I have CIDP and now he is sending me to another neurologist that specializes in this field. However I cannot get in to see him for a month and a half and I’m really concerned because my symptoms are not getting better. I have health insurance through OptumCare Southwest medical and I don’t know what to do. I’m really perplexed because I’ve had several nerve studies and it the last neurologist took nine months to come up with this disease and now the new neurology specialist wants to give me another nerve study.

Jump to this post

Hi @slavichx, I'm just seeing this post now. How are your symptoms these days?

Slavich, I would assume that your current neurologist will share your medical history with the new specialist, including results of diagnostic tests you did. You may wish to ask the new specialist why another nerve study is required. It is possible that she/he wants to compare the results of the tests over time.

You might also be interested in this discussion:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

As you prepare for your upcoming appointment with the new neurology specialist, have you organized your questions into a list?

Liked by HankB

REPLY
@slavichx

I have been to a neurologist that has taken nine months to figure out I have CIDP and now he is sending me to another neurologist that specializes in this field. However I cannot get in to see him for a month and a half and I’m really concerned because my symptoms are not getting better. I have health insurance through OptumCare Southwest medical and I don’t know what to do. I’m really perplexed because I’ve had several nerve studies and it the last neurologist took nine months to come up with this disease and now the new neurology specialist wants to give me another nerve study.

Jump to this post

@slavichx
Like Colleen, I did not notice your post when you placed it here on 9/15. Sorry no one responded then, did not mean to ignore you certainly! Interestingly CIDP came up in two other discussions just today. One person with CIDP, @sparshall , said that it is very important to have the diagnosis and start treatment for it as soon as possible as waiting too long could lead to unfortunate developments such as potential paralysis. Not trying to alarm you, but you should make sure your doctors are moving things along toward treatment options in a timely manner. Hope to see you post here again. Best, Hank

REPLY
Please login or register to post a reply.